Using genomic data and the blockchain network it is now possible to send anonymous genetic information around the world in the blink of an eye. Meet the companies that have sprung up over the last couple of years that want to help us protect and control our own genetic data.
As the cost of sequencing an individual genome gets lower and more people have access to their genomic data, a question has arisen about data ownership. Namely, who owns or should own the data that is generated by genetic tests? While this is a debated question, many feel strongly that we should have the right to use and benefit from our own genetic data.
“I am convinced that I am the only one who has the right to own the information about my genome, it’s like the right to express my thoughts, the right to choose a job or religion. This is one of the basic human rights to dispose of our body and mind in the way we want,” Alexey Gorbachev, told me. He is CEO of Russian biotech Zenome, one of the companies using blockchain and genomic data science to empower the genetic testing consumer to control the use and sale of their own data.
The rise of direct to consumer genetic testing companies such as 23andMe, providing both ancestry and health testing options, has happened quickly. Consumers have been signing away access to their own genetic data, often without realizing it, and several companies have profited hugely as a result. Companies like Zenome aim to combat this and give the power back to the individual.
In an age of personalized medicine, access to genetic data is a valuable commodity for pharmaceutical companies for developing new therapies and diagnostics. “We see that by enabling the user to earn by sharing his personal information, we, on the one hand, help scientific progress and help the pharmaceutical industry to create new drugs, and on the other – guarantee a user’s privacy, hiding his or her sensitive information,” said Gorbachev.
Zenome and other companies in this space are using blockchain — made famous for being behind the digital currency Bitcoin — to help create a fair marketplace for genetic information. Blockchain is a type of information technology that does not rely on one central server, but instead all users are part of the network forming a ‘decentralized’ server that is much more secure. It allows new information to be shared between two parties in a safe and anonymous way.
We are now 16 years after the human genome project. The rapid reduction in the price of whole genome sequencing since then means that it is now much more affordable for an individual to have their genome sequenced. A couple of years ago, getting your genome sequenced would have cost around $10,000 (€8518), whereas whole genome sequencing is now being offered by companies such as the Italian Dante Labs and US-based Veritas Genetics for between €200–1000, although we haven’t quite reached the stage of the hotly anticipated ‘$100 genome’ yet.
Israeli biotech DNAtix is one of those using blockchain to allow DNA data exchange between individuals. CEO, Ofer Lidsky, told me: “We are bringing a new possibility of participating in research, testing your DNA, storing your DNA and staying anonymous. It’s the safest genetics on the planet that will be available, because currently, any genetic test that you do, you are compromising your privacy. Someone knows who you are and you have no control of where this information goes.”
He explained: “Each person owns his or her own DNA. If it’s DNA connected to their wallet and it’s encrypted, only they have access to their DNA. So if he or she wants to share it with a researcher they have to decide to participate in research and they will get rewarded in tokens for that.”
DNAtix has built its own blockchain to allow both anonymous data transfer of DNA sequence and to also allow people to have their genomes sequenced anonymously.
“The current blockchain technologies that are available do not have any solutions for genetics,” he noted. “For example, all the different blockchains such as Hyperledger, or of course Bitcoin or Ethereum, are trying to solve something that has to do with transaction speed. When it comes to genetics, transaction speed is not the issue, the major issue is the size of the data. Each human genome is 1.5 GB, which is huge compared to any transaction that you can think of that is currently available on blockchain.”
In a public ‘proof-of-concept’, DNAtix successfully transferred the complete sequence of Craig Venter’s Y chromosome last June using its blockchain technology — the first company to transfer sequence in this way.
Zenome launched what it calls the ‘first decentralized genomic internet’ in September 2018. When asked what makes Zenome’s technology unique from their competitors, Gorbachev said: “We have developed a new peer-to-peer network protocol that competitors do not have; we have developed a method for genomic data transformation… without losing performance and while maintaining complete privacy and we can work with any type of genomic data.”
Both Zenome and DNAtix have released some of their technology as open source on the developer platform github, to allow others to access the code and continue to develop it. Genetic cryptocurrency companies are relying on personal genome sequencing becoming routine, as this will mean that the value of the ‘tokens’ in their systems will rise. There will also be increased interest in applications to analyze genetic data, which they will be in a good position to design and provide.
The US is currently leading the field when it comes to this space with companies such as Luna DNA, EncrypGen and Nebula Genomics, but both Gorbachev and Lidsky believe the market will continue to open up in Europe.
“From what we see currently, Europe is behind the United States, which is leading in direct-to-consumer genetics, but it’s getting everywhere. I mean, all the countries of the world are soon going to have the possibility of direct-to-consumer genetics,” noted Lidsky.
“European countries with their single-payer health insurance systems can make rapid progress in the genomics age. This is the case because government-sponsored healthcare systems would save money if all citizens had their genomes sequenced,” commented Dennis Grishin, co-founder of Nebula Genomics.
Dawn Barry, co-founder and president of Luna DNA, agreed: “Either through the growing interest in personalized products and services, or through the recognition that data can be used for many purposes, we believe we’ll see the emergence of more international companies.”
It remains to be seen if the market for personal genome sequencing is as big as anticipated, but if the success of direct-to-consumer genotyping companies such as 23andMe is anything to go by it seems likely that genomic cryptocurrency will be a success. For now we can only watch this space with interest!
This article was originally published in July 2018 and has since been updated.
Images via Shutterstock